Friday, 24 June 2016

Mostly I love social media and its ability to give 'real time' reaction to news and events, but I have to say that I didn't enjoy the negativity I saw this morning following the decision of the majority of the UK electorate to vote to leave the European Union.Some of the language I have seen has reminded me of the worst of that which is associated with dementia - war-like rhetoric, stigma and a lack of respect. Whatever you believe about EU membership and however you voted, in my view this is a time for solidarity within our communities and positivity about what happens next. My only EU Referendum retweet was to share the reaction of Brendan Cox, the widower of Jo Cox MP, who tweeted this:

Today Jo wld have remained optimistic & focussed on what she cld do to bring our country back together around our best values #MoreInCommon

'Optimistic and focused' sums up my mind-set entirely. Indeed, ever since I began campaigning on issues of health, social care, dementia and ageing I have lived by those sentiments (and others that are equally positive). Despite having some very negative experiences in my dad's years of living with dementia, I have chosen to work constructively to make improvements rather than constantly beat a drum of criticism and negativity.Now, more than ever, I feel that as people who care passionately about health and wellbeing we need to follow that mind-set and address the following:

Avoid turning the outcome of this vote into an ageist agenda

Dissecting a democratic vote into age group demographics is very divisive in my opinion. Whilst statistics suggest more older people voted to leave the EU than younger people, that doesn't make either opinion more or less valid, they are simply different viewpoints. Many older people I’ve met didn’t feel that what we have is what they voted for back in 1975and this referendum represented a chance to change the direction the UK has taken – effectively undoing a ‘wrong’ in their eyes. It is fair comment, even if you don’t agree with those individuals.Whilst younger people may be more impacted long-term, the message has to be one of optimism and focusing on what can be created, changed and achieved, not what can't. As a new mum (of 7 months!), that is the message I will be telling our daughter when she is old enough. There is nothing you can't achieve, and that remains as much an inspiring message now as it was last week. The health and social care sectors need to promote this to young people who are considering their career options in this changing political world – they can be our person-centred, creative, energised leaders of the future.

Celebrate our current overseas workforce, support and value them, and welcome other talented individuals in the future

So much of the referendum campaign focused on immigration, which is a hot topic in UK health and social care given the reliance these sectors has had on recruiting talented, hardworking people from overseas. That reliance won’t change, so the message I would like to give our politicians as they shape the country in the aftermath of this referendum result is:

Every overseas worker, no matter what country they are from, who is currently here and doing vital work in health and social care must be able to continue to do that if they want to and without any barriers.

Recruitment drives that take place overseas to fill vacancies for health and social care professionals will still be needed, and these roles need to be considered exceptional professions so that employers can make that recruitment process as seamless as possible. The only proviso is the need to be able to speak, read and write English to a high standard, which is purely a common-sense measure to ensure seamless communication and understanding in the many challenging situations people who work in health and social care face.

It is often said that overseas workers will do the work that the British-born population won't, and in both my dad's time in care homes (punctuated by spells in hospital) and through the work I do now, I have seen this consistently over many years. What I would add, however, is that as many non-EU workers cared for my father as EU workers did, so it's important to stress the diversity in the workforce that we have now as an indication of what we will need long-term.

Keep dementia care and support on the domestic (and international) agenda

With the Prime Minister resigning, there needs to be a renewed commitment from whoever takes his place to ensure that the work that has been done around dementia, notably under the auspices of 'The Prime Minister's Challenge on Dementia', continues. The first dementia strategy was launched under the last Labour government (in 2009), and whatever the future holds for the current government and the different political parties, the need for the UK to deliver the best dementia care and support in the world will not change. Likewise, the need to co-operate and collaborate on dementia research must continue, not just with European countries but worldwide.

Going forward...

I would urge NHS and social care leaders to galvanise their lists of needs and wants, rather than gnash teeth and delve into the language of disaster. Vulnerable people who are in our hospitals, care homes, and within our communities who need our services, our care and our support don't stop needing that now this vote has taken place.

Now is a time to set the agenda, lead, campaign, create, change and evolve... and dare I even say unite? Should integration of health and social care be realised through the outcome of this referendum result, that, for me, would be the greatest surprise of all, but who knows? With an uncertain future only one thing is guaranteed - each one of us has the chance to shape that which isn't yet decided.

Monday, 13 June 2016

Last
week was Carers Week, an annual awareness raising campaign that highlights the
vital role of people who care, unpaid, for family or friends. Carers Week also
aims to promote ways in which carers can be better supported, which is
particularly relevant for one group of carers who I feel are amongst the most marginalised
in society - older carers.While
many people dream of retirement and ageing as a golden period in their life
when they can pursue the hobbies they enjoy and where their time is truly their
own for, potentially, the first time in their life, the reality for an
increasing number of older people (70+, 80+ and beyond) is that they are taking
on a new and very unexpected role - that of an unpaid carer.Most
commonly this would be for a husband, wife or partner, but potentially also for
a sibling, a friend, a neighbour or even their own adult child. I personally don't believe
that there is an accurate figure for how many older people are carers. Age UK reported last month that 417,000 people aged 80 and over are carers (which equates
to 1 in 7 people in this age group), with 144,000 of these individuals
providing care for more than 35 hours a week. However, in common with the rest
of the caring population, many older carers don't identify as being 'a
carer' and are therefore never counted in official statistics.My
concern is that because older carers may be even less likely to engage with carers’
organisations, both from the perspective of getting support but also
participating in surveys/data collection etc, they are even more isolated and
underrepresented than younger carers. There is also the double whammy effect at
play – we know that as people age they can become more isolated and lonely. As a
society we aren’t great at supporting our older population generally, but if
you also happen to be a carer you are potentially in an even more
marginalised position.Then
you can possibly add in the stigma associated with the various health conditions
the person being cared for may have, which in many instances will include
either suspected or diagnosed dementia. It is my view that people who care for
a loved one with dementia are often even more isolated than other carers due to
the lack of understanding about dementia, the complexities it can present, and
the long-term, progressive nature of dementia.Why I
have a particular passion for raising awareness of the needs of older carers is
largely because I've met so many of them. People who tell a tale, time and time
again, of how they'd planned with their spouse of x number of years (usually a
lot of years) to have a dream retirement, before the love of their life
developed dementia and everything changed.Some
people remain upbeat, research the particular type of dementia their loved one
has, access support independently of the health and social care systems,
implement their own coping methods and get on with life. But many older people
just don't have the means to begin that crucial research process and access
vital support, and life begins to unravel from there.Much
of the best support available is online, through social media for example, and
the internet is an amazing resource for research and building knowledge and
understanding, but it only works for you if you have a computer or device that
you can operate, and access to broadband to connect you to this virtual world. Again,
some older people do, and I know from my own experience that my mum, who is in
her mid-seventies, is a total convert and daily user of an iPhone and iPad. But
her ability with these devices has been build up largely by living in a
multigenerational household where us younger members can help her. I
suspect that my mum is in the minority though. Far more older people live
alone, or are only living with the person they care for - they aren't able to
go out to classes to learn about technology, nor can they just pop down to the
local library to use a computer if there is no one else to care for the person they
are caring for. Leaflets in the GP's surgery or a telephone helpline may bring
more accessible support into their life, but the real issues go far deeper.They
can include denial, with some older people trying - with the best intentions - to
cover up the health problems that their spouse is experiencing. This further
isolates them from the help they need, and keeps other family members - for
example adult children - in the dark. Frequently there are also financial
concerns, with people worrying about paying for professional care (thus trying
to provide more care themselves and often putting their own health at risk),
and a lack of awareness about the assessments they are entitled to.The
very nature of ageing, where a person is likely to develop more health
problems, means that older carers are at high risk of carer breakdown. The
physical and mental rigors of caring for another adult mean a move into a
residential care setting for the cared for person is very likely, particularly
at known key-points of acute stress, for example if the cared for person becomes immobile or
incontinent. I
suspect that all of this is just the tip of the iceberg though. I feel strongly
that as a society we don't know anywhere near enough about what being an older
carer is really like, and because this group of people are more isolated than
many others, their opinions and feedback on their experiences and views are
rarely gathered systematically or on a large scale.As a
result we don't hear their voices, and policies often don't reflect the needs this
group of carers have. I sincerely hope that the new Carers Strategy, which is due
to be published later this year, will include key aspirations for supporting
older carers, harnessing not just health and social care in joint endeavour but
also engaging the wider community.We
all have a role to play in identifying and supporting older carers, and it can
be in really simple ways. For example, on a few occasions I've printed off
internet resources for older people who are caring for a loved one but don’t
have access to the online world. On those occasions I've also made a point of
ensuring I include information about carer's assessments and
carer's allowance - even if a person doesn't feel they want to have an
assessment or apply for benefit at that time things can, and do, change.As
Sir Francis Bacon is quoted in saying in the maxim for his book, ‘Meditationes Sacrae and Human Philosophy' that was published in
1597, “Knowledge is power.” And it is. Moreover, when it comes to being an
unpaid carer, it should never just be the preserve of the young.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.